Living Children with Trisomy 18 and Trisomy 13 Invited to Participate in Reseach Study on Communication!

SOFT Families of children living with FULL Trisomy 18 or Full Trisomy 13 age 3 and older are invited to participate in a study. This is a continuation of the study that was announced last summer at the SOFT Conference in St Louis. Follow the information below if you would like to enroll your living full T18 or T13 child follow the instructions below:

My name is Cheryl Liang and I am a medical student conducting research on the communication abilities of individuals with full Trisomy 18 or Trisomy 13 (ages 3 or older) as part of a summer research program at Saint Louis University (SLU) School of Medicine. I will work with Dr. Barbara Braddock (SLU speech-language pathologist), Katherine Christensen (SLU genetic counselor), and the SOFT organization to identify potential participants for this research.

If interested, I invite you to view the “Recruitment Statement for Research Participation” document which is posted below. If you would like to find out more, contact me through Dr. Braddock’s SLU phone line at 314-577-5609 or through my SLU email account at: cliang6@slu.

If you are not yet a member of SOFT (Support Organization for Trisomy) you can take care of that by visiting http://trisomy.org/soft-membership-information/! SOFT membership is Free and the best way to stay informed in the world of Trisomy!

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Saint Louis University School of Medicine

Department of Pediatrics

Description of the Research Project::

SAINT LOUIS UNIVERSITY

At Cardinal Glennon Children’s Medical Center

Recruitment Statement for Research Participation

1. Dr. Barbara Braddock and colleagues are inviting you to participate in this research study.

2. The title of this study is Potential Communication Acts in Persons with Trisomy 18 or Trisomy 13. Parents or legal guardians who have cared for individuals with the diagnoses of Trisomy 18 or Trisomy 13 for at least 6 months are eligible to participate. The purpose of this study is to quantify and describe potential communication acts and types of alternative and augmentative communication in persons with Trisomy 18 or Trisomy 13.

3. If you chose to participate in this study, you will complete 2 questionnaires describing your child’s communication abilities. You can elect to complete the questionnaires through the mail or email, or request that we call you at a scheduled time and record your responses to the questionnaires for you by phone. For each parent/legal guardian, questionnaire completion time is estimated at 15 minutes for the first questionnaire and 20 minutes for the second questionnaire. By agreeing to participate in this research, you will also give the study team permission to view your responses to the questionnaires.

4. The risks to you as a participant are minimal, and include the risk of loss of confidentiality. Additionally, some questions in the questionnaires may make you feel uncomfortable. You may choose not to answer any question with which you feel uncomfortable.

5. The results of this study may be published in scientific research journals or presented at professional conferences. However, your name and identity will not be revealed and your record will remain confidential. We will not identify you by name on any of the research documents or to anyone outside of the study team. We will use a number instead of a name (when asking others to help us interpret results and assist with manuscript preparations). This is the way we keep track of the information you have given us. We will keep the files containing study information in a locked office.

6. Participation in this study will not directly benefit you. The possible benefits to society are that the knowledge gained may help us create better treatments to help other persons who have developmental delays.

7. You can choose not to participate in the research. If you decide not to participate, there will not be a penalty to you or loss of any benefits to which you are otherwise entitled. You may withdraw from this study at any time.

8. If you have questions about this research study, you can call Barbara Braddock, PhD at (314) 577-5609. If you have questions about your rights as a research participant, you can call the Saint Louis University Institutional Review Board at 314-977-7744.